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Telegraph Tomorrow - Exercise and positivity can overcome ME

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charles shepherd

Senior Member
Messages
2,239
Esther12 said:
I don't really understand much about how BACME was set up/why it has any authority/respect/etc. Could you fill us in at all?

They seem rubbish - does that matter?
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Apologies if I opt out of writing a fairly detailed account of why BACME was set up and what it does etc at this time of night

If you have a look at their website, there is quite a lot of background information there:

http://www.bacme.info

I would point out that, with my health professional hat on, I am not a member of BACME and could not be because the MEA does not endorse the 'evidence based' NICE guideline on ME/CFS
 
Esther12

Esther12

Senior Member
Messages
13,774
charles shepherd said:
Apologies if I opt out of writing a fairly detailed account of why BACME was set up and what it does etc at this time of night

If you have a look at their website, there is quite a lot of background information there:

http://www.bacme.info

I would point out that, with my health professional hat on, I am not a member of BACME and could not be because the MEA does not endorse the 'evidence based' NICE guideline on ME/CFS
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I've looked at that thanks - it just doesn't seem to provide any reason why they should be more respected than a professional organisation for homeopaths.

They're the people making money from CBT/GET. Why should their view that CBT/GET should go on being provided carry any more weight than that of any other self-interested group? (Maybe a question for tomorrow rather than tonight).
 
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charles shepherd

Senior Member
Messages
2,239
A.B. said:
There are other studies that claim to show the effectiveness of CBT for CFS. A pre PACE meta analysis reported that up to about 70% of patients had normal fatigue levels after CBT. :rolleyes:

There's a mountain of shit that needs to be cleaned up. These studies cannot be right - either they're conflating other things with CFS or their methodology is horribly biased, or maybe both.

What will happen if PACE is retracted and more people become aware of how poor the science is in this area?

Can the death of the PACE trial spark a small revolution where research is finally held to a certain standard?
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Firstly, I think it is highly unlikely that the PACE trial papers will be retracted

If this were to happen, it would obviously have an effect on how NICE view their guideline on ME/CFS

But as already discussed, the NICE guideline on ME/CFS was published in 2007 and was not based on results from the PACE trial.

It was based on the evidence for CBT, GET etc in the (2006) York University systematic review.
 
Scarecrow

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
charles shepherd said:
See my reply to AB….
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Thanks but my question was more specific and was before A.B.'s. I wasn't asking about retraction of the full paper.

Scarecrow said:
Given that PACE was post 2007, I was wondering if there would be any implications for the NICE guidelines if the recovery claims and normal range calculations are retracted as the #MEAction petition calls for.

Would that strengthen your case with NICE?
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charles shepherd

Senior Member
Messages
2,239
Scarecrow said:
Thanks but my question was more specific and was before A.B.'s. I wasn't asking about retraction of the full paper.
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Apologies - replying in haste I didn't note that your question was more specific…...

Given the extremely strong defence that has been mounted all they way along by The Lancet etc I think it's highly unlikely that we are going to see any significant retractions taking place

If this were to take place it would certainly strengthen our case for a review of the 2007 NICE guideline

But, as already noted, the recommendations re CBT and GET in the 2007 NICE guideline were based on a number of clinical trials pre 2007 and the PACE trial played no role in this guidance
 
SOC

SOC

Senior Member
Messages
7,849
charles shepherd said:
Given the extremely strong defence that has been mounted all they way along by The Lancet etc I think it's highly unlikely that we are going to see any significant retractions taking place
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I'm not sure why. The PACE papers are vastly more flawed than the XMRV paper that got retracted, and may even prove to have been fraudulent. Surely that is sufficient for retraction?
 
A

Aurator

Senior Member
Messages
625
charles shepherd said:
But as already discussed, the NICE guideline on ME/CFS was published in 2007 and was not based on results from the PACE trial.

It was based on the evidence for CBT, GET etc in the (2006) York University systematic review.
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If this is the case, I can't help wondering what on earth the point of PACE was and is. If it wasn't needed to corroborate NICE guidelines in 2011 and if it's generally acknowledged that it turned out not to have corroborated very much at all, how is it possible to see it as anything other than a spectacular waste of money, not only in hindsight but in its conception also?
 
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halcyon

halcyon

Senior Member
Messages
2,482
Aurator said:
If this is the case, I can't help wondering what on earth the point of PACE was and is. If it wasn't needed to corroborate NICE guidelines in 2011 and if it's generally acknowledged that it turned out not to have corroborated very much at all, how is it possible to see it as anything other than a spectacular waste of money?
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I think the co-funding by the DWP might be a clue of the purpose.
 
A

Aurator

Senior Member
Messages
625
halcyon said:
I think the co-funding by the DWP might be a clue of the purpose.
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Yes, but my point is it seems PACE wasn't even needed for the purposes of setting the present GET/CBT-based guidelines. So why was it even commissioned?
 
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daisybell

Senior Member
Messages
1,613
Location
New Zealand
So if the guidelines are ever to be changed, does that mean the focus needs to be on the harms caused by GET rather than on the titanic PACE? In which case, the MEA report should be a great starting point....
 
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Sean

Senior Member
Messages
7,378
digital dog said:
NHS HOSPITALS AT BREAKING POINT DUE TO ME SUFFERERS TAKING PACE!
How about we all throw ourselves into A and E claiming that we have followed PACE's recommendations and bring the NHS to its knees? Now that would get some coverage.
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He he.

They psychosocial school should be careful what they wish for, indeed demand.

Seriously, the bean counters are not going to be too impressed by null long-term result, when there are broken legs and kidney transplants to fund.
 
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